Tag Archives: wheelchair

Chronic Fatigue and Family

tn_family.jpgMy viewpoint as a husband and father – I’ve tried to keep it brief!

Chronic illness is a daunting challenge to a marriage relationship and family unit. Some say it can be make or break. In our case, we had a double whammy! Over thirty years ago my wife contracted a particularly aggressive form of rheumatoid arthritis and was told she could be in a wheelchair inside four years. Years later, long after our children had left home, I was diagnosed with chronic fatigue syndrome.

My response to my wife’s diagnosis wasn’t surprising, as my upbringing hadn’t fitted me out to deal with illness. In my childhood, any suffering or indeed any expression of emotion within the family, was kept mainly under wraps. My way of dealing with these things was to do something practical to try and hold things together. I put everything into my work, family and helping out where I could within the community. I did most of the shopping, including, for a time, buying my wife’s clothes and became an expert in the intricacies of M & S’s lingerie department. Our children attended the village school and we became involved with the some of the other parents and attended the church. I ferried our children and their friends to the various activities.

My wife made her role of wife and mother her topmost priority and gave her all, often sacrificially, she had high standards. She was a good listener and it was quite usual for me to arrive home to find the pile of ironing still untouched, because she had given several hours to someone in need. I found that difficult, as she was the one needing physical help. But apart from several notable exceptions, there was little of that.

As the rheumatoid activity increased, she became more physically limited and fatigued. It was easy for me to leave for work in the morning and bury myself in my work while she often spent the day lying down. This was the side most people didn’t see. She found the pain and physical limitations were hard to bear and there were frequent outbursts of expression. I found it increasingly painful to watch my wife, my loved one, in so much pain and distress and I felt so horribly helpless. One night when it got so bad I went down on to our beach in the dark and in desperation reached out to God from the depths of my being, imploring Him to help us.

I felt trapped by the illness and restricted, held back. Once, I was asked if I had thought of leaving and I can honestly say that was never ever on the agenda. We married because I loved her and was committed to our marriage. On the other hand I wanted to escape from the illness, I hated what it was doing.

In our search for understanding, we were led over the years along a path of Christian contacts. We learned new marriage communication skills and how to deal with the emotional pain that was bubbling away just below the surface. I also found healing and release from the grief and loss I was experiencing. Our attitudes changed and in particular people were noticing how well my wife was walking and the courageous way she was dealing with her illness.

Then I was diagnosed with chronic fatigue syndrome ME/CFS and I had a new battle to contend with. For the first time I was able to understand first hand what fatigue was like and I benefited from my wife’s experience. The effect this had was to draw us closer together than ever before.

So far as our children are concerned, yes, they did miss out on some things, they can hardly remember their mother well. But I believe the experience has enriched them and we are proud of the way they now handle themselves, their marriages and children.

The last two years have been the most difficult for us, our lives being battered by accidents and illnesses. But in it all we have continued to experience wonderful strengthening and enabling to do what seemed impossible. I don’t know what the future holds, but we know God is with us and the best is yet to come!

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Filed under Christian, Christianity, chronic fatigue, disability, family, healing, health, health & wellness, lifestyle, M.E., personal, relationships, seniors, spiritual

Wheelchair World

tn_wheelchair.jpgMy wife has had rheumatoid arthritis for over thirty years, but has never had a fall until:

During her art class in the village hall, my wife slipped (quite how remains a mystery) and fractured both her femur and elbow. I often wondered what they got up to but didn’t know it was that wild!

When she finally returned home from a long stay in hospital, we made use of a wheelchair for a while. Initially as a back-up in case of need, but for a week or so it became a necessity! This was to be a new challenge for us, especially as I had M.E. my strength was very limited.

This was our first introduction into the world of wheelchairs and in my case that of the ‘pusher!’ Ours was a sturdy but basic, red-painted job kindly loaned by the Red Cross society and folded down (not quite neatly) into the boot of our car. That was the first surprise, it was far heavier than expected, a real hernia-inducer! We also had to become familiar with the procedure to be followed every time we moved the car from one location to another, which in time became second nature …. open car tailgate and lift out chair, expand frame and erect handles, wheel round to the passenger door, (stoop) apply left and right hand brakes, assist passenger to be seated, (stoop) swing out footplates, fold down footplates, adjust foot straps, release brakes and you’re off …!

The first thing I noticed, on a good level surface, we soon gathered speed and there was a feeling of power. That is, until we came upon a patch of gravel when we slithered to a halt as if we were in a highway escape lane. Rough or uneven paving slabs brought me to my senses because the whole rigid contraption became a bone-shaker and brought back memories of Smallweed in Dickens’ Bleak House “Shake me up …!” It was then that I was reminded that I had a passenger, someone who was in some discomfort before we even started.

Any journey had to be carefully planned, taking into account parking, hills, and obstacles and of course my own physical limitations. Thankfully there is often help at hand as passers-by are often only too ready to offer assistance. Like when we entered an unfamiliar country inn for a meal. An assistant sprang to our help and guided us to a table and saw to our every need. Or the time when a young man propelled my wife up a steep slope so she could see the sea view. Real skill is required to negotiate heavy doors with self-closing mechanisms, kerbs, bollards or just ‘people’ and a constant reminder that the first thing to make contact with any obstacle or someone else’s legs are your passenger’s feet!

The next challenge was the supermarket. We had seen couples using a special trolley hooked on to their wheelchair, lovingly enjoying the joint experience of togetherness, carefully choosing their purchases. So we thought we would give it a try. Now perhaps we had the wrong sort of trolley or it was just the wrong day, but it was like trying to steer an eight-wheeled eight-foot long vehicle. Never again!

Thankfully my wife gained strength and became more mobile, but we were really grateful for the wheelchair, because it got us to places that would have been impossible otherwise. But now, whenever I see someone unloading a wheelchair from the back of their car I look with more sympathy and understanding … lift out chair, expand, erect handles, wheel round, apply brakes, assist passenger, swing, fold down, adjust, release brakes ….I have not spoken of the passenger’s view of course, but that’s another story.

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Filed under disability, family, lifestyle, personal, retirement